April 21 - 23, 2023
#curekrabbe Family Conference
Where Families Impacted by Krabbe disease Can Connect, Share, and Learn
KrabbeConnect will be hosting our first in-person #curekrabbe Family Conference in Tampa Florida Location: Westin Tampa Waterside, 725 South Harbour Island Boulevard
What you can expect from the conference:
This family conference will feature scientific, advocacy, and family support sessions. The Family Conference will take place April 21st-23rd, 2023. This Krabbe disease Family Conference is designed to empower patients and their families by providing information and tools to help navigate Krabbe disease. KrabbeConnect wants you to use this time to connect and learn from others walking in your shoes, hear from the medical and research community on recent updates, and get to know the companies supporting Krabbe disease. A detailed agenda is forthcoming.
Frequently Asked Questions
How much will it cost our family? Expand Each family will be required to pay a $35 non-refundable registration fee. For families directly impacted by Krabbe disease (living or no longer living) KrabbeConnect can cover the hotel and travel costs for those needing assistance. Grandparents or other family/friends are welcome to attend but they will need to cover their own hotel and travel costs unless they are part of the caregiver team. KrabbeConnect’s financial resources for airfare/gas/room costs are limited to two parents/caregivers, and any child/adult living with Krabbe disease. What is the cost of the rooms? Expand
Each standard room will cost $279/night plus applicable state and local taxes (currently 13.5%). KrabbeConnect will cover your 3-night room stay for the #curekrabbe Family Conference. However, if you’re able to share any of the costs, please let us know. This allows KrabbeConnect’s resources to reach more families for this conference.
Should you decide to extend your stay, this will be at your own expense. All hotel room incidentals will also be the responsibility of the attendee/s.
Yes, KrabbeConnect will make every effort to work with each family interested in attending this conference. Our goal is to ensure the cost of this conference does not burden your family. However, if you’re able to share any of the costs, please let us know. This allows KrabbeConnect’s resources to reach more families for this conference.
KrabbeConnnect will cover the following: Friday, April 21st: Lunch and Dinner; Saturday, April 22nd: Breakfast, lunch, and dinner, and April 23rd: Breakfast. Any food and snacks consumed during travel or at other times throughout the conference will be the responsibility of the attendee/s.
Any family member impacted by Krabbe disease is welcome to attend (parents/caregivers, grandparents, siblings, aunts, special caregivers, etc.), however; KrabbeConnect’s financial resources for airfare/gas/room cost are limited to two parents/caregivers, and any child/adult living with Krabbe disease.
We’re unable to offer sibling care at this time. Additional liability insurance is needed to offer sibling care safely. Siblings are welcome to attend the conference, but we ask that if a child is being disruptive, please guide your child to another area of the hotel. It’s important that dialogue can occur at the conference between the attendees and the speakers.
KrabbeConnect invites families to utilize a mask at their discretion. If you have a condition that weakens your immune system or you take certain medications, you may need to take extra precautions or consult with your doctor before attending. KrabbeConnect encourages you and everyone you love, care for or care about, to be respectful of others while in attendance at the #curekrabbe Family Conference.
Do not reserve your plane ticket if you need financial assistance to attend this meeting. KrabbeConnect will utilize the information in the “Reserve Your Spot Now” form to connect with you directly on your travel needs.
Great! Please complete the “Reserve Your Spot Now” form below so we effectively manage the number of attendees at the 2023 #curekrabbe Family Conference. If you require airline travel, please feel free to book your flights at your convenience. KrabbeConnect recommends booking 2-3 months in advance of the conference dates to secure cost-friendly airline tickets. KrabbeConnect will be responsible for reserving all hotel rooms.